Endometriosis: Autoimmune disease development while in medical menopause for endo?

Hi everyone, this is my first post. My story is a bit unusual. I'm currently on a drug called Orilissa to treat my endometriosis pain. It basically turns down your natural hormones so that they don't make the pain worse (estrogen is what fuels endo). I had a hysterectomy last year, but it is back on the nerves and ligaments.

So I'm in this state of medical menopause the past few months, and into the second pack I started noticing it really taking effect: hot flashes, pain relief, etc. Good news, right?

Well, that's also about the time I started noticing problems swallowing and speaking due to lack of saliva. My lips started sticking together. Became more dry, started peeling a bit. My nose is also always incredibly dry. Used to wake up with dried blood in it, but that seems to have calmed down recently.

My eyes haven't been as bad, for some reason. I had lasik surgery years ago, don't know if that has anything to do with it or not, but I have been feeling compelled to rub my eyeballs when my eyes are closed, something I did when I used to wear contacts and took them out at the end of the day.

Last week my eyelid puffed up. About five years ago I had a terrible six months of my eyelids and under my eyes becoming horribly swollen for no reason (that anybody could find). Steroid drops and an eventual shot seemed to calm things down, but nobody ever got to the bottom of it. The doctor in ER said it might be the start of an autoimmune disease.

In the past I've also had periods where my face, ears, knuckles, elbows and needs would suddenly become very hot and swollen in the mornings, and then subside after a half hour or so. No one could figure that one out, either. It eventually went away.

My only other mysterious system was high liver enzyme levels on and off over the years. No one could pinpoint the why of that, either. Everything was checked. Oh, and a resorbed tooth that had to be pulled when it cracked.

I've been researching that SS usually comes on during menopause because estrogen, which acts as a protector against the disease, goes drastically down. That's the state I'm now in, because of the meds I'm taking. The timing doesn't seem like a coincidence.

I also read this morning that lack of androgens or male hormones also plays a part in SS. Another medication I'm on is spironolactone, which I take for my PCOS symptoms (acne, unwanted hair growth on face/body). Turns out that people lacking this hormone sometimes are a risk to develop autoimmune diseases.

Apparently men who take anti-androgen therapy for prostate cancer often go on to get autoimmune diseases, too.

Not sure if anyone else is in my situation or if what I'm saying makes any sense, but please let me know if it does. I am going to my ear, nose and throat doctor this morning and am not sure if he will be able to test/do anything about it. Any advice? I was just thinking of asking for a referral to a rheumatologist? Are there specific blood tests I should ask for?

Other symptoms include feeling worse after brushing my teeth (even using anti-dry variety), feeling panic when it takes me three tries to swallow, and feeling like it's not going to happen. Having to clear throat a lot. Talking in a hoarse voice sometimes. Cracked sore at side of mouth that is not healing.

Any insight or advice greatly appreciated!

Many thanks,

Tara

	Quote:
Originally Posted by taramandarano Hi everyone, this is my first post. My story is a bit unusual. I'm currently on a drug called Orilissa to treat my endometriosis pain. It basically turns down your natural hormones so that they don't make the pain worse (estrogen is what fuels endo). I had a hysterectomy last year, but it is back on the nerves and ligaments. So I'm in this state of medical menopause the past few months, and into the second pack I started noticing it really taking effect: hot flashes, pain relief, etc. Good news, right? Well, that's also about the time I started noticing problems swallowing and speaking due to lack of saliva. My lips started sticking together. Became more dry, started peeling a bit. My nose is also always incredibly dry. Used to wake up with dried blood in it, but that seems to have calmed down recently. My eyes haven't been as bad, for some reason. I had lasik surgery years ago, don't know if that has anything to do with it or not, but I have been feeling compelled to rub my eyeballs when my eyes are closed, something I did when I used to wear contacts and took them out at the end of the day. Last week my eyelid puffed up. About five years ago I had a terrible six months of my eyelids and under my eyes becoming horribly swollen for no reason (that anybody could find). Steroid drops and an eventual shot seemed to calm things down, but nobody ever got to the bottom of it. The doctor in ER said it might be the start of an autoimmune disease. In the past I've also had periods where my face, ears, knuckles, elbows and needs would suddenly become very hot and swollen in the mornings, and then subside after a half hour or so. No one could figure that one out, either. It eventually went away. My only other mysterious system was high liver enzyme levels on and off over the years. No one could pinpoint the why of that, either. Everything was checked. Oh, and a resorbed tooth that had to be pulled when it cracked. I've been researching that SS usually comes on during menopause because estrogen, which acts as a protector against the disease, goes drastically down. That's the state I'm now in, because of the meds I'm taking. The timing doesn't seem like a coincidence. I also read this morning that lack of androgens or male hormones also plays a part in SS. Another medication I'm on is spironolactone, which I take for my PCOS symptoms (acne, unwanted hair growth on face/body). Turns out that people lacking this hormone sometimes are a risk to develop autoimmune diseases. Apparently men who take anti-androgen therapy for prostate cancer often go on to get autoimmune diseases, too. Not sure if anyone else is in my situation or if what I'm saying makes any sense, but please let me know if it does. I am going to my ear, nose and throat doctor this morning and am not sure if he will be able to test/do anything about it. Any advice? I was just thinking of asking for a referral to a rheumatologist? Are there specific blood tests I should ask for? Other symptoms include feeling worse after brushing my teeth (even using anti-dry variety), feeling panic when it takes me three tries to swallow, and feeling like it's not going to happen. Having to clear throat a lot. Talking in a hoarse voice sometimes. Cracked sore at side of mouth that is not healing. Any insight or advice greatly appreciated! Many thanks, Tara

Hi Tara

Sounds like you've been having a hard time, you have my sympathy.

Last year was a bad year for me healthwise. I ended up having 3 major surgeries and other procedures and hospitalisations.

In the midst of it I suddenly developed swollen and painful hands, extreme tiredness, and pain in other joints too. I also had extremely dry mouth and sore red eyes. I had all the blood tests for autoimmune arthritis but nothing showed up except high inflammatory markers and liver enzyme. The pain settled down with steroids. I saw a rheumatologist who said it wasn't autoimmune. Things settled down afer the steroids for about a year.

Now I had a severe flare up of all the symptoms and new ones, again responding to steroids. The bloods again only showed raised inflammatory markers and liver enzymes. I saw a different rheumatologist and she diagnosed me with an autoimmune disease called psoriatic arthritis. It is related to psoriasis, althoygh I've never had the skin condition. It runs in our family though.

I wonder if you may have something like Sjorgren's syndrome, which is often associated with other autoimmune disease.

If I were you I would insist on seeing a rheumatologist. The inflammatory markers that I had were a raised CRP and ESR.

I hope this is helpful and you soon get to the bottom of your puzzling symptoms.

	Quote:
Originally Posted by taramandarano Hi everyone, this is my first post. My story is a bit unusual. I'm currently on a drug called Orilissa to treat my endometriosis pain. It basically turns down your natural hormones so that they don't make the pain worse (estrogen is what fuels endo). I had a hysterectomy last year, but it is back on the nerves and ligaments. So I'm in this state of medical menopause the past few months, and into the second pack I started noticing it really taking effect: hot flashes, pain relief, etc. Good news, right? Well, that's also about the time I started noticing problems swallowing and speaking due to lack of saliva. My lips started sticking together. Became more dry, started peeling a bit. My nose is also always incredibly dry. Used to wake up with dried blood in it, but that seems to have calmed down recently. My eyes haven't been as bad, for some reason. I had lasik surgery years ago, don't know if that has anything to do with it or not, but I have been feeling compelled to rub my eyeballs when my eyes are closed, something I did when I used to wear contacts and took them out at the end of the day. Last week my eyelid puffed up. About five years ago I had a terrible six months of my eyelids and under my eyes becoming horribly swollen for no reason (that anybody could find). Steroid drops and an eventual shot seemed to calm things down, but nobody ever got to the bottom of it. The doctor in ER said it might be the start of an autoimmune disease. In the past I've also had periods where my face, ears, knuckles, elbows and needs would suddenly become very hot and swollen in the mornings, and then subside after a half hour or so. No one could figure that one out, either. It eventually went away. My only other mysterious system was high liver enzyme levels on and off over the years. No one could pinpoint the why of that, either. Everything was checked. Oh, and a resorbed tooth that had to be pulled when it cracked. I've been researching that SS usually comes on during menopause because estrogen, which acts as a protector against the disease, goes drastically down. That's the state I'm now in, because of the meds I'm taking. The timing doesn't seem like a coincidence. I also read this morning that lack of androgens or male hormones also plays a part in SS. Another medication I'm on is spironolactone, which I take for my PCOS symptoms (acne, unwanted hair growth on face/body). Turns out that people lacking this hormone sometimes are a risk to develop autoimmune diseases. Apparently men who take anti-androgen therapy for prostate cancer often go on to get autoimmune diseases, too. Not sure if anyone else is in my situation or if what I'm saying makes any sense, but please let me know if it does. I am going to my ear, nose and throat doctor this morning and am not sure if he will be able to test/do anything about it. Any advice? I was just thinking of asking for a referral to a rheumatologist? Are there specific blood tests I should ask for? Other symptoms include feeling worse after brushing my teeth (even using anti-dry variety), feeling panic when it takes me three tries to swallow, and feeling like it's not going to happen. Having to clear throat a lot. Talking in a hoarse voice sometimes. Cracked sore at side of mouth that is not healing. Any insight or advice greatly appreciated! Many thanks, Tara

I have A LOT of these problems, too! Have you tried a food elimination diet? I have an intolerance to gluten & dairy that seems to cause MOST of these issues. When you only have an intolerance, it’s hard for doctors to diagnose. I’ve had A LOT of sores in my mouth recently & my lips have been EXTREMELY dry! The sores pop up when I eat something I’m not supposed to. Just an idea.

I had 3 major surgeries including my hysterectomy in 2016. Then on Christmas day that same year I developed an arthralgia in my hands that would not let up. 4 months later when I got to see a rheumatologist I was diagnosed with psoriatic arthritis. This condition has a genetic link so I was probably predisposed to developing it, I put it's arrival down to the stress of the year and the loss of my ovarian hormones.

	Quote:
Originally Posted by Kezzyann I had 3 major surgeries including my hysterectomy in 2016. Then on Christmas day that same year I developed an arthralgia in my hands that would not let up. 4 months later when I got to see a rheumatologist I was diagnosed with psoriatic arthritis. This condition has a genetic link so I was probably predisposed to developing it, I put it's arrival down to the stress of the year and the loss of my ovarian hormones.

Holy crap! My maternal grandmother had HORRIBLE food allergies, including dairy/gluten, lupus & had osteoporosis SO bad that she could barely move some days! I’d almost bet she had psoriatic arthritis, too! I need to get tested...

I was diagnosed with psoriatic arthritis shortly after my first endometriosis removal surgery. Just before my hysterectomy my skin inflammation spiked to an all time high. Wondering if it is all related to each other. My GYN said that people with endometriosis are more likely to have an autoimmune condition. Hoping my endo removal and hysterectomy will calm everything down.
Best of luck to you.

Based on what I have read, endometriosis is often comorbid with sjogren's, Lupus, and RA. I have had a lot of puzzling symptoms over the years, including a path report for a rheumatoid nodule about seven years ago. I also was diagnosed with POTS about five years ago, and that is now viewed as autoimmune.

My inflammatory markers have always come back normal and I'm RF negative. My eosinophils were always on the high end, but doctors have ignored that. Turns out, that would make since, given that my body was fighting the endo lesions.

There are a lot of articles out there about immune function and endometriosis. Unfortunately, none of this research offers a clear solution. A researcher in Calgary published an article in 2017, Targeting Mast Cells as a Viable Therapeutic Option in Endometriosis". Look it up - it's worth a read, even though there's not clear answer yet.

Endosister74, I've had some odd symptoms since surgery, and wonder if there's something about it that makes mast cells go nuts.

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Originally Posted by pkittyec Endosister74, I've had some odd symptoms since surgery, and wonder if there's something about it that makes mast cells go nuts.

I go to the rheumatologist next week. I will try to remember to ask her about mast cells and endo removal/hysterectomy. My psoriasis has been so bad the last few months but my joint pain has been better since surgery.

	Quote:
Originally Posted by endosister74 I go to the rheumatologist next week. I will try to remember to ask her about mast cells and endo removal/hysterectomy. My psoriasis has been so bad the last few months but my joint pain has been better since surgery.

That's interesting about your joint pain - maybe it reduced the systemic inflammation that the endo was causing. Apparently it makes it circulate everywhere.

I have seen two rheumatologists since my rheumatoid nodule - so far, they dismiss my case based on my normal blood work.

I have wondered if there might be someone who specializes in immune dysregulation with an interest in endometriosis and/or similar conditions.

Seems like endo just doesn't fit into the right "bucket." The true specialists seem to be surgeons or fertility docs. But they aren't focused on systemic issues. I feel like I need one who focuses on how it affects my overall health. Maybe I need to start a new post on that and see if anyone has a doc like that.

I was actually trying to find the link between endometriosis and autoimmune disease! I have had weird strange symptoms several years now, for some reason those symptoms seem to be decreasing so I thought maybe my endo was causing nerve damage? I have no idea, but I think I read somewhere the endo patients are at a higher risk for autoimmune disease. I have has symptoms of MS and Hashimotos but the symptoms are mild enough for me to believe its not either of those things. I was diagnosed with b12 deficiency so i am careful to take b12 daily, which also seems to be helping with symptoms.

I have not figured out why my eyebrows are gone, my eyelashes are very thin. My scalp itches at night. My hair isnt as thick as it once was. My eyes have blepharitis and my eyes are dry when i sleep and sometimes hard to open when i wake up so i keep eyedrops next to the bed. My face gets dry peeling skin. I have rosacea so my cheeks and nose are so red. Some kind of autoimmune?? Possibly! Its annoying tho!